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(The E-Series) Understanding Restlessness at End of Life: A Practical Approach

In this episode, we're joined by Juanita Herrera, a Doctoral Occupational Therapy student at Emory & Henry University who shares about her research and work related to understanding and managing the challenging symptom of restlessness, that can be especially common at end of life.

Aug 1, 2024

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What is end-of-life restlessness?

End-of-life restlessness, also called terminal agitation, describes physical, emotional, and/or spiritual distress – including agitation and anxiety – that may take place during the final stages of life.  This can be a difficult symptom both for the one experiencing it and for the caregiver seeking to provide comfort.

Energy conservation, a way of adapting and modifying your day-to-day activities, is one practical way to improve quality of life and alleviate end-of-life restlessness.

How can energy conservation help?

As a caregiver, being strategic in the way that you use your energy supply throughout the day can help you make the most of your energy while meeting your loved one’s care needs.  Additionally, modifying your loved one’s day as needed can help them conserve energy and be at their best for as long as possible throughout the day.

A few things to try: 

  • Keep frequently used items in easily accessible places.
  • Replace heavier items with lighter ones. For example, use plastic dinnerware rather than china and glass.
  • Install long handles on faucets and doorknobs that require less effort to turn.
  • Consider moving the loved one’s bed to the first floor to eliminate stair climbing.
  • Sit rather than stand when possible while preparing meals, washing dishes, ironing, etc. (sitting reduces energy usage by 25%)
  • Consider online grocery deliveries or pickup.
  • Use a walking bag to store away frequently used items on the go.

Additional energy conservation strategies:

  • Plan ahead and prioritize. Decide what needs to be done today and save the rest for another day.
  • Alternate heavy and light energy tasks. Throughout the day, make adjustments based off you and your loved one’s energy levels.
  • Pace yourself. Take a rest break before you or your loved one feels tired.
Home Modifications & Adaptive Equipment

Caregivers can incorporate creative modifications in the living environment and adaptive equipment with daily care tasks to help conserve energy and reduce the frequency and intensity of their loved one’s restlessness.

Modifying your home:

  • Widening doorways, such as removing doors and hinges can promote easier access throughout the home.
  • A video doorbell can help ensure security.
  • Wireless devices such as Google home and Alexa help you quickly access daily information and stay organized.

Adjusting routines with adaptive equipment: 

  • Utensils with built-up grips or straps can compensate for hand weakness.
  • A rocker knife uses a rocking motion to cut food.
  • A weighted spoon may reduce spillage during feeding for individuals with tremors.
  • Plate guards for one-handed feeding provides a barrier to help scoop food into a utensil.

 

Presented by Hospice of the Piedmont and Hospice of Randolph, The E-Series is an educational webinar series aimed at engaging our community, exploring relevant topics and educating about ways to connect with our organization. Funding for The E-Series is provided by the Dr. John A. Lusk Fund for Hospice and Palliative Care Education. To listen to previously recorded episodes of The E-Series, click here.